Very Important Patient (VIP): Glenn's

Glenn and his wife Datha live near Phoenix, AZ. In 2010 Glenn was diagnosed with Leiomyosarcoma, a rare cancer of the smooth muscle cells. In late 2011 he was accepted into a clinical trial in Santa Monica, CA.

Glenn's Story

In 2008, Glenn began having pain in his left thigh and calf. He spent the next 2 years consulting several different specialists until the last specialist, a vascular surgeon, diagnosed him Venous Reflux Disease in his legs. In 2010 a procedure was performed to collapse a superficial vein in his calf to stop the pain, but the pain still remained. An MRI revealed a tumor (larger than a tennis ball) in his left thigh that was wrapped around an artery, vein and nerve.

Surgery was scheduled a few weeks later. The tumor was removed and a resection done on the artery and vein that was severed by the operation. Glenn remarked, "Thank God the nerve that was severed only caused some nerve damage with minor discomfort and did not affect my ability to walk." The surgeons took a sample of the tumor and initially did not find any cancer. A few weeks later the lab results confirmed a diagnosis of Leiomyosarcoma.

Sixty six days of radiation were successful in removing the cancer in Glenn's left thigh. Unfortunately, the cancer metastasized into the blood stream and several nodules were found in his lungs and liver. In the meantime Glenn's job ended shortly after surgery when his company lost a contract. His wife Datha was also unemployed. With only some savings and retirement benefits, they were barely able to hang on financially.

Chemotherapy was next. After 5 different chemotherapy treatments over a year and half, none were able to stop the nodules from growing. Glenn says his faith in God is what kept him going. They looked for clinical trials in the Phoenix and Tucson areas, they live near Phoenix, but due to the rare form of cancer, none were available.

In the fall of 2011 Glenn was referred to a doctor in Santa Monica, CA and was accepted into a clinical trial. However, it required them fly to Los Angeles every 21 days for over 7 months which put even a larger burden on their finances. The clinic referred them to Lazarex Cancer Foundation for financial assistance during the clinical trial treatments.

Datha said "I will never forget the day I contacted Lazarex Cancer Foundation. In the midst of chaos and uncertainty, they showed a deep concern and compassion for our immediate health and financial circumstances. They took our information and started the procedure to give us travel assistance. I was overwhelmed with joy. My tears were from stress relief, hope, and amazement in the "just in time" support. I felt like someone just covered me with a warm baby blanket and the brick wall was no longer standing."

Glenn added that it was a real blessing when he learned that the foundation approved travel assistance between AZ and CA for his trial. Treatment started in September 2011 and, after receiving 7 months of treatment, there is no new growth and the larger nodules are shrinking.

Glenn stated "I don't know what the next steps look like as we continue down this road, but I thank God for the positive treatment of the cancer and Lazarex Cancer Foundation for providing the means to afford the treatment. The foundation has provided amazing support in the midst of a very stressful time and not just financially."

Read about some of our other VIPs

Patients like this month's VIP, Glenn, are benefiting from support like this every day. Please help us by sending this email to friends who you think would be interested in Lazarex.

---

Satinka Stiles - Bone Cancer Patient

Satinka Stiles is a 37 year old mother of 4 young girls. She was diagnosed with a very rare bone cancer in November 2008. The cancer is a giant cell tumor located in the spine near her tailbone. There are less than 10 people in the U.S. known with her particular cancer. So her only chance for survival at this point is to receive treatment in California through a clinical trial

Doctors in Austin, Texas did not want to operate on this tumor due to the very high risks so they sent Ms. Stiles to Houston, Texas to a well known cancer hospital called M.D. Anderson. There they did a series of embolizations which were supposed to stop the blood flow to the tumor and "starve" it to keep it from growing. Instead it made the tumor more aggressive and it started to grow rapidly. In August 2009 the Oncology team at M.D. Anderson scheduled Ms. Stiles to have an extraction of the tumor. She spent 3 months in the hospital which left her unable to walk or even get out of bed. Upon returning to her home in Austin, Ms. Stiles' Oncologist saw that the tumor had already grown back and decided to start radiation therapy. The tumor had shrunk 25% but a few months later it began to grow again. In December 2009 the Oncology team at Texas Oncology read about a clinical trial for giant cell tumors in Santa Monica, CA and felt strongly that she should go as there was nothing more to be offered through conventional treatment. Ms. Stiles knew that this was her only other treatment option but could not afford the frequent travel, or to relocate to, California. Her social worker at Texas Oncology told her about Lazarex and in July 2011, before she knew it, she was on the first flight to California to participate in the Denosumab clinical trial. Now, in 2012, Ms. Stiles is walking again, the tumor has shrunk significantly and she is looking forward to the future with her children!! Thanks to Lazarex Cancer Foundation!

---

Brittany Hess - Alveolar Soft Part Sarcoma survivor

Brittany Hess is one of the great success stories at Lazarex. She has been courageously fighting an extremely rare soft tissue cancer called Alveolar Soft Part Sarcoma (ASPS) since age 19 when she was diagnosed in July 2001 at Stage IV. Brittany continues to beat the odds by exceeding the typical efficacy of her medicine in clinical trials and as a vibrant young woman is leading as normal a life as possible with her dog and her boyfriend in the Seattle, Washington area.

According to Brittany's mother, Bonni, Brittany's November 2011 CT scans were stable and she has set a record for the longest sustained disease stability within her clinical trial. "We continue to be immensely grateful for the 30 months of disease stability and significant tumor shrinkage/disappearance that Cediranib has provided for Brittany, as well as everything that all of you (the Lazarex team members) have done and continue to do to make Brittany's continued participation in this clinical trial possible," Bonni said.

Brittany is experiencing side effects from the medicine, including diarrhea, nausea, vomiting, headache, insomnia, and memory problems. Yet, according to her mother, she endures with a bright outlook. "Brittany determinedly moves forward with her young life being as active as possible and living each day to the fullest with her usual great passion, positive attitude, bright spirit, and radiant smile," said Bonni.

"We now move forward into a new year on this challenging ten years and three months ASPS journey with much happiness and continued great hope in our hearts," says Bonni. "But we also continue our aggressive and relentless search, research, and networking with other ASPS patients/families for possible alternative treatments in the heartbreaking event that Brittany develops resistance to the Cediranib and experiences rebound and disease progression."

---

Ben Doherty - Acute Myeloid Leukemia (AML)

Ben, his wife Missy and their 3 children: Gavin (8), Elizabeth (6) and Cate (3), live on a 10 acre farm in rural eastern Oregon. They have temporarily moved to Seattle for Ben’s clinical trial where he is receiving treatment for Acute Myeloid Leukemia (AML).

In 2007 Ben was diagnosed and treated for Osteosarcoma with several surgeries (that resulted in a partial femur replacement and an artificial hip) and 18 months of chemotherapy that successfully destroyed the tumor. Since October 2010 doctors have been monitoring nodules in his lung. Whether they are metastases (of the osteosarcoma) is TBD because in May 2011 Ben was diagnosed with Acute Myeloid Leukemia (AML), a possible side effect of the intense treatment he received for the osteosarcoma. The lung nodules are slow-growing so no active intervention is planned until after he finishes the AML regimen.

Ben has been participating in a clinical trial in Seattle, WA since June this year. By late July his levels of leukemia were undetectable and he is in remission, which paved the way for a bone marrow transplant on September 8th. His sister Lisa is the bone marrow donor. Since the transplant Ben has remained positive despite isolation, fevers, infections and headaches. The best news he has received of late is that the transplant is successfully growing bone marrow, producing new blood cells, and he is developing a new immune system!

Ben’s words sum up his determination, "As I said when I first started the leukemia treatment, this is a triathlon. The cycling portion of my triathlon began with the bone marrow transplant. Cycling is the longest portion of the triathlon, both in distance and time and there is always a time of adjustment before you get into your cadence and become smooth on the bike. Over the past several weeks, I have had some difficulties getting into my rhythm. I will put my head down and keep pedaling until I get into my groove."

Missy (Ben’s wife) adds, "Before Cancer, Ben was an athlete. He loves all sports, is passionate about soccer and loves to run. We were training for a marathon when he first felt the symptoms of the bone cancer. (We began training and his hip began to hurt while we were running. The soreness turned into pain, which eventually led to his diagnosis). Running in a race is a dream of Ben’s that we hope we can one day fulfill. The treatment for osteosarcoma changed Ben’s lifestyle. He enjoys spending more time with our family. Since he was four, Ben’s favorite activity has been reading, something he shares with our children. Instead of playing sports, he coaches our children in soccer and baseball and gets his exercise taking care of our 10 acre farm. He enjoys being outdoors and caring for his cows. Ben loves to garden now, especially with Elizabeth and Cate. They sit in the garden for hours taking care of the soil and talking. We have veggies growing from late spring through fall and we have lots of fruit! Gardening has become a sort of therapy for Ben and he is wonderful at it."

Missy continues, "No one knows how much time we have on this earth. When you have a cancer diagnosis, you start to look at mortality issues more closely. Lazarex has given us one of the most precious gifts, the ability to stay together as a family. For the first three months of Ben’s leukemia treatment, the children had been staying at both sets of Grandparents while I stayed with Ben at the hospital. This situation worked well, but was not great for our family. The children missed us terribly and didn’t understand why they could not be with us. Every night when we would talk to the kids on the phone, they would ask when they could see us again. Every time, their cries would break our hearts. I felt as if I was having a revelation the day I got the call from Lazarex stating we were approved for assistance for our lodging and travel expenses. That day, we were leaving for Seattle and saying good-bye to our children for the next two months. However, with the call came hope. Now we had the financial resources to keep our family together during Ben’s treatment. Within 30 minutes of receiving a call from Lazarex, we were finally happy with our plan. The children are able to come and visit Ben in the hospital every day and they are able to attend a school that is exclusively for children who are going through cancer (whether it is a family member or themselves). This has given stability to the children and although they are scared and do not understand why their Dad has to have cancer, at least they can cuddle with him and tell Ben “I love you Daddy” every night. Every time Ben looks into their eyes, he is reminded of what he is fighting for. Lazarex gave us the gift of keeping our family together."

---

Kevin Herring - Acute lymphocytic leukemia

My name is Kevin Herring. I was diagnosed with acute lymphocytic leukemia five days after my 23rd birthday and was originally given a thirty percent chance of survival. This news was devastating and I had to find a way to understand what was happening to me and why.

I was a college student one semester away from graduation whenthey told me that I was going to San Francisco and there I would spend the next year of my life. I was angry. I had been looking forward to graduation and a great summer with my friends but this would not be my fate. I then realizedthat there comes a point in which cancer patients must decide how they are going to cope with their disease. Some choose to talk about it and express their feelings, but anyone that has ever met me knows that's not me; some decide to try meditation or relaxation techniques, but again, not me. Instead I chose to take my diagnoses as a challenge and my challenge was to prove that I was good enough, strong enough and had the perseverance needed to deserve a life - but I knew I couldn't do it alone.

I went through months of chemotherapy and total body radiation including numerous spinal taps, bone marrow biopsies and eventually a bone marrow transplant. I held hope and faith that this would make me stronger and would mold me into someone that, if chosen to survive, would be better than I ever was. It's amazing what you can learn when you are stretched to your absolute extremes both mentally and physically. You learn the importance of family and love. You learn that people who have never met you will reach out their hand and ask "How can we help?" Lazarex Cancer Foundation was there for me, in an e-mail they sent me they said, "That source is what makes one brave, fosters perseverance and renews faith." My source in rehabilitation was Lazarex Cancer Foundation. They gave me the financial resources to have a home where I could recover and I thank them from the bottom of my heart. My fight is not over but I am comforted in the notion that when there is good to be done good people are there to help.

I would like to thank those in the National Marrow Donor Program: the UCSF staff, especially Dr. Andreadis and Lindsay; the foundation of my support, my Mother, and Lazarex. All of them have given me and others like me the ultimate gift, a chance to fight! Lazarex Cancer Foundation cannot help those like me without your support. I trust that there is good and strength in all of us and my challenge to you is to help support life however you can. I wish all of you the best that life can bring.

Read about some of our other VIPs

Patients like this month's VIP, Kevin, are benefiting from support like this every day. Please help us by sending this email to friends who you think would be interested in Lazarex.

---

Michael Robbert - Gastro Intestinal Stromal Tumor

May 2011
My name is Michael Robbert. I am a 35 year old male working as a computer Systems Administrator in Golden, CO. I am also an avid runner and triathlete living with cancer.

In October 2007, I was training for the Denver marathon. Training was going great, and I felt like I was on track for my best race yet (and I've run quite a few). About 2 weeks before the race I got sick. I passed it off as food poisoning until I nearly fainted in our bathroom. My wife took me into the emergency room where they did emergency surgery to remove an ulcerated tumor from my stomach. Later I found out the tumor was a malignant GIST (Gastro Intestinal Stromal Tumor) which had already metastasized to multiple sites in my abdomen. GIST is a rare type of sarcoma known to not respond well to standard chemotherapy nor radiation. Luckily, in recent years research has made it fairly well understood, and there are now targeted chemotherapy drugs that work very well in most cases. I immediately started on Gleevec, the standard first line treatment. Unfortunately, my tumors didn't respond well and continued to grow. A dose increase helped at first, but then started to show signs of growth after a few months. Around that time I decided to get a second opinion from the experts at M.D. Anderson Cancer Center (MDACC). The team of doctors there prescribed a second line drug called Sutent. The Sutent seemed to be working fairly well with check-ups every 3 months in Houston, TX.

In the fall of 2009, the scans showed that growth had continued again, and we needed to try something new. The doctors decided the most promising option for me was to start a clinical trial for a newer drug called Dasatinib. The protocol for this trial required me to get checkups every 28 days at MDACC in Houston. The travel to Houston was already becoming a burden, but we decided we needed to go ahead with the best option for my health.

Knowing my travel was going to get even more frequent and expensive, I spent several months investigating and trying out different options for travel assistance. They weren't fitting my needs for various reasons, and the now frequent trips were starting to really take their toll on our finances. Finally I found Lazarex and applied for their assistance. The day I got my acceptance letter saying they would be willing to pay for my airfare and lodging was a huge relief for me and my wife. I have been traveling to Houston every month since, and this has only been possible with the financial assistance I've been receiving from Lazarex. My doctors have told me I will have cancer the rest of my life, and I should expect to be on one drug or another. Dasatinib is working well for me now, but the doctors expect I'll develop resistance to it eventually. When I do, I'm hopeful I'll find a new trial which may require just as much travel as I'm doing now. As long as Lazarex has the funds to continue helping, my focus can be spent on my fitness rather than my finances. After all, the doctors state my fitness is what helps me tolerate the treatments better than most cancer patients.

---

Teryl Ribeiro - Bone cancer

In December of 2004, I began experiencing knee pain from what I thought was a sports injury. After months of tests and a biopsy, in May of 2005, I was finally diagnosed with bone cancer in the tibia of my right leg. I later learned that this was a very rare cancer known as mesenchymal chondrosarcoma.

I underwent nine rounds of chemotherapy at UCSF in San Francisco with Dr. Theirry Jahan. At least I had a pretty view from my hospital room! In January of 2006, I had surgery and Dr. Richard J. O'Donnell removed my right knee and part of my tibia, replacing them with titanium implants. I went through months of physical therapy in Modesto. I especially benefited from a water therapy program and quickly went from crutches, to a cane, and eventually walking on my own. I was enjoying being "cancer free."

In 2007, I learned that my sarcoma bone cancer had metastasized to my lungs. In June, I again found myself at UCSF in San Francisco for lung surgery with Dr. Michael J. Mann. This time, I was treated with chemotherapy closer to home in Modesto. I had six rounds of chemo in 2008 followed by a second lung surgery at UCSF.

The chemo didn't seem to be working and I began looking for alternative treatment on the Internet. I found out about a clinical trial in Southern California for a new chemo drug from Europe. My doctors in San Francisco agreed that I should give it a try. In April of 2009, I drove with my relatives for 5 ½ hours to Santa Monica to meet with Dr. Sant P. Chawla at the Sarcoma Oncology Center and begin a clinical trial with the drug Yondelis. I received treatment overnight and returned every 21 days for ongoing infusions. The Yondelis worked and reduced the size of my metastasized cancer by 25%!

I was experiencing financial hardship with all of the medical bills, travel expenses, and increased living expenses. I live on a fixed income and I had depleted my savings and required the help of family members to make the trips every 21 days to Santa Monica. In June of 2008, I found the help of Lazarex Cancer Foundation to reimburse my gas and hotel expenses. This was a tremendous help to relieve my financial burden.

In September of 2009, I had surgery at UCSF on my left lung, where they removed 50% of the upper lobe. I had a brief recovery period then more surgery in December on the right lung. These were very invasive surgeries and the pulmonary recovery was very difficult. After months of recovery, Dr. Chawla agreed to let me start a new clinical trial of Yondelis, which I will continue through 2011. The Yondelis is keeping my cancer at bay. I tried to be considered for cyberknife treatment, but I am told I will probably have to have more traditional surgery in the future.

I can't begin to thank the Lazarex Cancer Foundation for all their help and support. Through all of this, I remained very positive and steadfast in my faith. I learned to knit and gave scarves to friend, patients, and medical caregivers. I volunteer for the American Cancer Society. My fiancée, Ron, and I are looking forward to our future together.

Patients like this month's VIP, Teryl, are benefiting from support like this every day. Please help us by who you think would be interested in Lazarex.

---

Chad Hickey - Lymphoblastic Leukemia

In the summer of 2007 Chad Hickey, then 23, embarked on what he thought would be a new adventure in paradise. After closing his business and packing up his life he flew to his new life in Hawaii. However the adventure was to be of a different course than he had planned. Shortly after arriving on the island he noticed his health declining. He experienced severe fatigue, lapse of energy and he found himself at times in virtual deep surf unable to move his arms. It was at this point that he sought more medical attention and after a few tests it was confirmed that he had Acute Lymphoblastic Leukemia. He endured several rounds of chemotherapy in 2008, but in April of 2010 just 3 weeks before the completion of a 2.5 year treatment, Chad had a full relapse. This time chemotherapy alone would not be a viable option and Chad needed to move to San Francisco for an experimental regime at UCSF. He began the pretreatment and a search for a bone marrow donor. Over the next five weeks Chad and his fiancée Anna reunited and went through rigorous chemo while planning a wedding. Chad's sister Erin was a match and a bone marrow transplant date was set.

While the fear and struggle was going on a financial issue was also looming. Chad had just finished paying off the first few years of medical bills and was now facing much, much more. Weeks of trying to find a place for he and Anna to stay while he was treated in San Francisco yielded few options. With debt growing and unable to find housing, Chad and Anna were connected with Lazarex through Tiffany with the UCSF Social Services. Lazarex was able to support them in finding and covering the expenses of having a place to stay in a city far from home. With this grant Chad and Anna were able to have a home away from home and just days prior to the transplant got married with a huge burden lifted. Chad put it best in his blog...

"...there are tears in this fight... tears of all kinds. For over three years now I have found myself at lows that offer little light at the end of the tunnel. I will say however in this time there have been hands outstretched that in no way can I ever thank. Imagine thinking you lost everything at 23 in Hawaii and then just days before the love of your life returns realizing you may lose more than you could imagine. To have a stranger, this Lazarex Cancer Foundation enable us to have a home and a space during the hardest fight of my life, well its something I couldn't ever thank them enough for. Today I am grateful for these tears.... "

As of now Chad is six months out of transplant and dealing with the normal side effects. He and Anna are able to finally get some time alone while she is his in home nurse and support system. Despite the side effects and hardships that continue, they have found happiness in creating a life together through this adventure and are eternally grateful to Lazarex for enabling and facilitating a home environment.

Read about some of our other VIPs

Patients like this month's VIP, Chad, are benefiting from support like this every day. Please help us by who you think would be interested in Lazarex.

---

Brittani Powell - Giant cell tumor
Brittani Powell is a 14 year-old eighth grade honor student from Sacramento, CA. In 2009 she was a normal, energetic middle school girl until a giant cell tumor was discovered on her spine in July. Soon after that she had emergency decompression and tumor resection of the cervical spine. In August of 2009 she had another surgery to finish removing the tumor. The tumor grew back quickly after that. She then had two surgeries back to back to remove the tumor again in October. After those surgeries the doctor told Brittani's mother that he had never seen a giant cell tumor so aggressive and that at this rate she would only live six to 24 months.

Brittani's doctors suggested a 19 week chemotherapy cycle, which eliminated the tumors. However, as soon as chemotherapy stopped her excruciating pain returned. A scan showed the tumors had returned by March of this year. Doctors said that surgery to remove the tumors would be too risky, and recommended radiation. Her family found a clinical trial in Santa Monica, CA (about 400 miles from Sacramento), but while Brittani was awaiting acceptance, her symptoms became worse, leading to general numbness and paralysis of all four limbs. By late spring this beautiful girl had become a quadriplegic. The doctors agreed to do an emergency surgery that would restore her ability to walk and to move her hands, but suggested that maybe her parents should let nature take its course and stop putting her through all of these painful surgeries. They changed their minds after Brittani's mom told them about the trial and that the family definitely wanted the surgery. The surgery worked and Brittani quickly began regaining function of all four extremities. With the help of Lazarex, Brittani was finally accepted to the Denosumab trial and started the loading doses. She has been improving ever since with no relapses. After spending a year on home study she is now back with her eighth grade class. She is walking and writing almost at normal levels. Most importantly, she has her beautiful smile again!

---

Thomas McLaughlin
Thomas McLaughlin is a Lazarex patient who we have been supporting since he began his clinical trial 9 months ago. His cousin was soon to be a Lazarex patient but he passed away prior to being admitted in the trial. Read More